Mirena coil or zoladex. How on earth do you decide?

I have CFS/me and Zoladex floored me, extreme fatigue, flare up of symptoms and new symptoms. So specialist now recommended fitting mirena coil. I read so many bad experiences of this. Then zoladex I couldn't have predicted I'd react in the way I did - except that ME sufferers do respond badly to hormone treatments as your nervous system is compromised. After 5 + years of fatigue etc that has radically compromised my life - can't work, can't walk far, stand for long etc - it fills me with despair that all the endo treatments seem to equal increased fatigue and more pain with no guarantee of improvement.

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  • I have no experience of interactions with CFE/ME but I did do exceptionally well for a time with a Mirena Coil after my first surgery. the thing is if you don't get on with it, you can have it removed easily. If you are on Zoladex or Prostap, particularly if you are on the 3 month injection, you are stuck with the side effects until it wears off.

    Mirenas do take a while to calm down but I wish I had known about it in my 20's. I could have saved myself a lot of pain and heartache. If you look online it stands to reason you will read more horror stories than happy endings, very few people getting relief from having a Mirena and getting on with their life will be on forums talking about it, but those that have problems will be seeking help or warning others about their experience.

    A word about the pain relieving element of Mirena for endo, my specialist said they should be changed every 18 months to 2 years as although the contraceptive qualities last for 5 years, the hormones that surpress endo pain start to lose their potency quicker. I went from having awful heavy flooding and terrible period pain to no bleeding and no period pain. Good luck whatever you decide.

  • Thank you v much Sally, you are right about it being the bad experiences reported on line and yes it's reassuring to know it can be 'whipped out' if too bad.

    I'm a strange one as I have severe endo, undiagnosed for at least 6 years, as my main symptom has been fatigue all the time. So my incentive to have hormone treatments is to slow endo not pain relief.

    I've found a good consultant I trust and he's recommended mirena but he's the first to admit the effects of treatments on different individuals are just not known. I thought CFS/ME was confusing!

  • It's good that you trust your consultant, very important to have a good relationship with them. He's right that even the specialists consider endo an elusive and complicated condition to treat, there's no straight lines in symptom patterns and so much depends on how severe it is by the time you are diagnosed. That was my issue really, it had gone untreated for over 20 years and the damage from adhesions is my main problem. I'm only just beginning to get a lot of fatigue and it's so frustrating.

    A word of warning about insertion and removal, if you find smears painful, insist on a local anaesthetic, your consultant will probably do it as a matter of course but worth discussing beforehand. It makes all the difference.

  • Yes my problem is I'm in such a weakened state through it not being diagnosed that any treatment is going to floor me. I have to get my head round that and adapt my life accordingly! So hard. There is no treatment for fatigue beyond rest and pacing and the hope that hormone treatments and probably surgery for me will bring an improvement long term.

    I'm having coil fitted under general at same time as lap to confirm extent of endo. It was found almost be accident on MRI scan, and is severe and penetrating bowel. Should be relieved it's not malignant.

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